Tomorrow we will have been at the UVA hospital for a full week. Most of it spent in the PICU. Sophie contracted c-diff and then some other mystery illness that presented like septic shock but was never confirmed. However, it was treated as sepsis and Sophie responded beautifully. It was very scary to witness and we are so glad it’s behind us now. C-diff, however,is a little more of the clingy kind of friend. He will be with Sophie for quite some time we hear.Living at the hospital is so tiresome. I can’t even imagine what it feels like for Sophie. While it’s nice that everyone recognizes us and says hi to Sophie, it doesn’t make us feel any more welcome or ‘at home’. This morning the doctors estimated another 4 days here. Maybe more. While her blood lab measurements are all improving and are no longer in the dangerous category, she isn’t demonstrating consistently steady increases. Something will improve and then something else will drop and she needs another IV supplement or a platelet transfusion. It’s highly likely Round 3 of IV chemo will be delayed because she won’t be well enough to withstand it by Feb 4th. Especially because each round is expected to hit her harder than the last since she’s beginning the cycle with a weaker body (and mind too, I’m sure. We haven’t seen any real smiles or laughs in quite a while.
We had to reschedule Sophie’s MRI last Thursday that was going to show us how the tumor is responding to the chemo. We hope she can get well soon because we really need some good news (and we are expecting good news- the cranial nerve palsies have lessened noticably)!!